From sailing the world to living in one room in an aged care facility – Ketra’s life undergoes a dramatic change when she becomes disabled by severe M.E. (Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome).


Ketra tells her story and shares what helps (heart rate based pacing and lots of rest) and what harms her in this article in the Sydney Morning Herald. She explains why she thinks the ME/CFS guidelines in Australia need changing in this Courier mail article – which also covers break through research at the National Centre of Neuroimmunology and Emerging Disease (NCNED) on the Gold Coast, Australia.

 

And then there is After Unrest.

 

After Unrest is a short documentary Ketra has made from her bed in aged care, it not only tells her story and but also includes talks by the health care professionals that have helped Ketra with her disability. It touches on current research by the National Centre of Neuroimmunology and Emerging Diseases (NCNED) and provides a toolbox of useful information for patients, their families, carers and health practitioners alike.

There is a Low sensory version, without music for ME/CFS patients suffering from noise sensitivity.

 

Contents:

Introduction

Ketra’s story: 01:54

Health Professionals: 6:57
01- What do many doctors think when they see patients with Myalgic Encephalomyelitis, also known as ME/CFS or Chronic Fatigue Syndrome? 07:13
02- How is ME/CFS diagnosed? 07:33
03- How can General Practitioners help ME/CFS patients? 07:55
04- Are there any tests that can be done to aid a diagnosis? 08:36
05- Can exercise intolerance be measured? Many ME/CFS patients find exercise makes them worse. 10:36
06- How can heart rate monitors and pacing help ME/CFS patients? 13:03
07- Can ME/CFS patients benefit from exercise? 14:26
08- What does post exertional malaise (crash/payback) look like? 15:50
09- Are there any blood tests or biomarkers for ME/CFS? 16:54
10- What do NCNED researchers understand about ME/CFS pathomechanisms? 17:26
11- Could faulty ion channel receptors cause the pain in ME/CFS? 19:06
12- What does NCNED research say about treatments? 20:14
13- Is there any role for psychology in ME/CFS? 21:13
14- When even food triggers your symptoms, what can you eat? 22:04
15- What does research say about allergies, intolerances and sensitivities? 22:51
16- Are sufficient funds directed towards ME/CFS from the Australian medical research council? 23:32
Australian patients & their needs 24:10
Key Points 25:46
Resources 25:54
Dedication 25:59
Credits 26:06
 
Brochures:

Brochures are available for printing, emailing and sharing.

Resources:

Resources are available for learning more about the topics covered in this video.



 Posted: 2018-01-27